We recently ran a global online survey targeting People With Chronic Pain (PWCP) as a result of various chronic diseases who have used social media as part of self-management. The aim of the survey was to better understand use of social media for self-management and what participants perceive to be their most valuable uses. We were overwhelmed by the level of support and interest the survey generated. Firstly, we would like to particularly thank everyone that assisted with sharing the survey and making it known to their extended networks. We are very excited to examine this data and preliminary analysis contains some very rich and interesting insight into participant usage patterns of social media. Formal analysis is currently underway but we are pleased to provide the following preliminary data. Full analysis will be presented and published in future academic publications.

The survey targeted 200-250 PWCP. We received 231 responses, of which 3 were eliminated after answering “no” to living with chronic pain. Thus, leaving us with 228 total responses. The majority of questions were not mandatory, giving respondents the freedom to navigate the survey and have some control of what data they supplied.

Participant demographics:
A range of participants answered the survey. Around half of respondents were Australian but we collected very respectable numbers from the United States and the United Kingdom, as well as smaller numbers from Canada, New Zealand and Spain. Interestingly, although only representing very small numbers, Ireland, South Africa, China, Kenya, Pakistan, Burma and Taiwan were also represented. In terms of the participants themselves, the absolute general trend of responses came from married females, aged between 22-59 (largest group = 40-49). The vast majority of were at least high school educated, with a generous portion college educated. Employment status showed considerable variation with no major differences between type of work (full time vs part-time) but a large portion are currently “not working for pay” due to “ill health”.

Disease characteristics was the next area investigated, with most participants reporting their chronic pain had been formally diagnosed. Treatment for chronic pain varied considerably but most notably consisted of consultation with the doctor and/or medication. It was also interesting for us to note that a large portion of participants attested to being given a formal diagnosis of a chronic disease leading to their current chronic pain. Responses again varied considerably but mostly consisted of both rheumatoid arthritis and osteoarthritis, complex regional pain syndrome and diabetes. A noteworthy small group with endometriosis. However, the majority of respondents indicated having been diagnosed with “fibromyalgia”.

Chronic Pain/Health Status:
The next section of the survey specifically investigated people’s chronic pain and how it interfered with their day to day lives. Questions regarding pain interference represented 5 major functional domains including: cognition/sleep, social and recreational life, activities of daily living (ADLs), psychosocial health status and physical health status. Although scores were close and range narrow, when averaged out and ranked, the order of pain’s interfering effect on participants looked like this (from most to least):
– ADLs
– Social & Recreational Life + Physical (same amount)
– Psychosocial
– Cognition/sleep

Further, the list of actual most affected outcomes to least looked as follows:
– Ability to stand for more than 30mins
– Enjoyment of life
– Household chores
– Social activities
– Emotional burden
– Ability to walk more than 1.6km (1 mile)
– Day to day activities
– Ability to work/work at home
– Relationships with others
– Depression
– Anxiety
– Concentrating
– Sleep
– Family life
– Ability to sit for more than 30mins
– Ability to take in new information

Social Media Use:
This final part of the survey consisted of the crux of the information we were seeking from the survey…..

We first asked participants what social media platforms they had used as part of their self-management of chronic pain. The order from most used to least across the whole survey was as follows:
– Social Network Sites (SNS)
– Discussion Forums/Message Boards
– Blogs
– Wikis
– Video Sharing Sites
– Microblogs
– Photo Sharing Sites
– Tagging/Aggregation Sites
– Chat Rooms
– Virtual Environments

User numbers of Discussion Forums/Message Boards through to Video Sharing Sites did not differ too much. However, note that Social Network Sites were the overwhelming stand out. Use dropped off significantly from Microblogs through to Virtual Environments.

For social media use, we asked participants to rate whether the given platform had in anyway helped the same outcomes for pain interference listed above. We have been able to observe with relative consistency across the various social media investigated that usage appeared to be most positively correlated to improvements (“at least somewhat”) for:
– Ability to take in new information
– Emotional burden
– Enjoyment of life
– Relationships with other people
– Ability to participate in social activities
– Depression
– Anxiety

Thus, this lends preliminary support for a positive role social media may play in managing areas such as ‘social and recreational life’ and ‘psychosocial health status’.

As previously alluded too, in depth analysis is ongoing and we hope will uncover a great range of statistics, while also exploring those above in more depth. Once conducted, we will publish many more formal results and keep all informed. For now, we hope the above paints an interesting picture for you all.

Again, thanks to those who participated in our global online survey. Please contact me if you have any questions at mmerolli@student.unimelb.edu.au (@merollim)